The United States represents Alexander Ocasio-Cortez and Jan Schakowsky sent letters Thursday to potential buyers of two potential genetic testing firms, 23andMe, asking for details on consumer data privacy, which they should both acquire.
The letters signed by 20 other Democratic lawmakers (read here and here) were sent to the Regeneron Pharmaceuticals and the TTAM Institute, who proposed a separate bid to buy 23andMe. In the letter, they asked whether Regeneron and TTAM would continue to provide customers with options to delete data and withdraw consent for use in data in medical research. They also want to know whether 23AndMe’s current policy will be maintained to share genetic data with law enforcement without a warrant, and whether the two entities intend to proactively inform 23AndMe of their sales of 23AndMe customers.
After years of struggling, 23AndMe filed for bankruptcy protection in March and sold its assets. Shortly thereafter, its CEO Anne Wojcicki resigned. Wojcicki tried to privatize the company, but her proposal was rejected by a special committee composed of the 23AndMe board.
In May, Biotech Company Regeneron announced that the company was named a successful bidder at a bankruptcy auction, offering $256 million to acquire 23andMe. “We believe we can help 23andMe achieve and build its mission to help those interested in understanding their DNA and how to improve their personal health while promoting Regeneron’s efforts to use large-scale genetic research to improve the treatment of society and prevent overall disease,” said Cofopoulos, Cofopoulos, Cofopoulos, Cofopoulos, Cofopoulos, Cofopoulos, Cofopoulos, Cofounder and Chief Science Officer, Company Saters of Company Satings of Company Satings.
But after the auction, Wojcicki’s own bid – offered $305 million through the newly-established nonprofit TTAM Institute. The proposal prompted a federal judge to reopen the sales process, and now both Regeneron and TTAM will have the opportunity to make the final bid.
Founded in 2006, 23AndMe has pioneered the field of personal genomics, which enables customers to understand their ancestors, family connections and certain medical risks after submitting spit samples. Despite selling more than 12 million DNA test kits, the company has never achieved profitability since its launch in 2021 and has worked hard to diversify its revenue stream. In another blow to the company, a major data breach in 2023 revealed personal data from millions of customers, including leaks to the Jewish heritage of China and Ashkenyaz.
The new owner of 23andme will get its huge genetic data, thus raising questions about how to use that data. Under 23AndMe’s current policy, customers can choose to provide their genetic data and other personal information for medical research. They also have the option to delete all data and instruct 23andme to destroy its saliva samples. Members of Congress who sent the letter Thursday are seeking clarity on whether Regeneron and Wojcicki plan to continue the practices.
Signatories also care about the possibility of genetic data shared with law enforcement and immigration authorities and the genetic and other personal data used to train AI models. They also require Regeneron and TTAM to disclose a complete list of all third parties that currently have access to 23AndMe data, and both entities will take steps to ensure transparency of future third-party access. 23AndMe has previously conducted years of research collaboration with Pharma Giant Glaxosmithkline.
Representatives asked Regeneron and TTAM to respond by June 26.
Wojcicki and 23AndMe’s interim CEO Joe Selsavage were on privacy and national security issues for sale at a House Oversight Committee hearing this week. At the hearing, Selsavage told lawmakers that 1.9 million people — about 15% of their client base — have asked for their genetic data to be removed from the company’s servers since the company filed for bankruptcy protection in March.
This week, more than 20 states and the District of Columbia filed lawsuits against 23andme, deciding that the company cannot auction highly sensitive personal genetic information from 15 million customers without consent or knowledge.
